Posted by Mishi Methven on Nov 10, 2011
Never before has time been such an abstract thing to me. In my previous life (aka "pre Stella's diagnosis"), I not only knew the date, day of the week and time, but I could rhyme off my rather complicated and ever-changing schedule quite easily. However, since Stella's cancer diagnosis, time has not been measured in anything that makes sense to me and I have trouble knowing the time of day it is, the day of the week---even the month sometimes.
The world outside our house seems like a foreign place now, the life we once led a distant memory that could very well have been anyone's life. Now time is measured in alarms going off to remind us to take an array of medications. The island in our kitchen is littered with pill bottles for various ailments for all the people who live here. A veritable alphabet of narcotics from A to Z (Ativan to Zoloft) and everything in between.....morphine...ondanzetron...advil...cipralex...ativan...valium...perkoset...gravol.
Without the comfort and organization that the knowledge of time and space used to give me, I feel like I'm free-falling through life. The lighting, temperature and feeling in our house in exactly the same night and day, season after season. I do remember certain dates... June 14th (diagnosis day), October 20th (Sam's birthday), December 25th (Christmas). That's about it.
For the last couple of weeks, there was a change in our lives that was more than the simple addition of Sam. We also, inexplicably, got a little bit of our Stella back too. The first two weeks after Sam was born, Stella made a mini rally back to health that seemed almost miraculous. Her energy improved, her mood improved and she seemed to come alive again. We went for walks that were requested by her, we dusted off the tea party set and hosted some really wild parties, we gave Sam baths and helped change his diaper. We started reading books again. Stella told knock knock jokes (not good ones, but really...are there any good ones???). She even agreed to go trick-or-treating. She lasted about 15 minutes before falling asleep in my arms, her drool running down my shoulder. Aimee and I took it all in, breathing deep breaths of red curls, brilliant smiles, cool wind on our skin, soft hugs and kisses. I didn't update the blog for over a week because I was much too busy living my life to even write about it. For the first time in a long time, I was able to just feel happy and grateful and as though there was a small window in the days that let the sunshine through the cracks again.
Then, yesterday, the colour went out of her cheeks again and the brightness faded from her eyes. She spent almost the entire day sleeping, sweaty and colourless on the couch without any interest in food, or television, or kisses. Aimee and I hope that it's just the change in her medication (we upped her morphine intake on Tuesday), but it's such an emotional roller coaster and I feel like I'm literally holding my breath as we all wait to see if this is just a small dip, or if this is "it". On days like yesterday, the clock is completely meaningless, the day of the week, temperature outside, month, completely irrelevant to our reality. Time has become an ally and an enemy all at once. I've ripped down the calendars that used to carefully map out our plans for the week. Plans full of school assignments, work, dinners, playdates, toddler classes in swimming, singing, soccer. I haven't bothered changing the clocks in our house from the timechange. Who cares, what difference does it make? Time only takes me further away from Stella and closer to the time when we will need to live without her forever.
The days are marked in the number of Dora episodes we can watch at a time, and we sit in the living room hour after hour on the couch while the world spins around us. I have realized that grieving can be a very selfish and self-centered thing. I don't have the energy anymore to work at my personal relationships, hygiene, hobbies, interests, future. I live in a bubble where the only realities are a three-week old baby and a two and a half year old girl who are living parallel lives going in completely different directions. For every gain that Sam makes, Stella seems to move backwards a little bit. Sam can hold his head up pretty well now, Stella has lost the ability to sit up unassisted. Sam is awake more, Stella is asleep more. Sam will soon start to babble, Stella has almost lost her ability to speak entirely. Sam's future seems endless and bright, Stella's seems short and mysterious. It's an uncomfortable mix of pleasure and excitement at our new son and fear and sadness for our firstborn. Our attention is split and I can't seem to find a balance between the two lives Aimee and I are responsible for. But each day, even on days like yesterday when Stella lacks the strength to chew food, she holds her arms out to her brother and holds him close. The scent of life and death intermingles between them. It still shocks me that this is my life, this is my reality. This time is NOW, and someday it will be THEN as in, "before Stella died".
It's strange to sit at the window and watch the world from inside. We hear garbage trucks roar by, see the sun rise and set, watch streetlights come on. Time passes, unnoticed. Time doesn't exist anymore as a way to breakdown the moments of my life. The only times that mean anything are the tiny instances when the four of us---me, Aimee, Stella & Sam, sit together on the couch in a huge mass of arms, legs, blankets, warmth and love. That is when I take deep breaths of life and wish with all my heart I could truly stop the clock forever.
STELLA & SAM
HALLOWE'EN WITH POPPA (no---this is not our house!)
FAMILY NAP TIME